1 (edited by dlm2010 Sun, 28 Dec 2008 09:12:24)

Topic: New to group

Hi Everyone!
I wanted to introduce myself to you, although, I feel like I already know you. I found this website when my husband, Ted, was diagnosed with a Klatskin's Tumor (Cholangiocarcinoma) in August 2008. I can't begin to tell you what a lifesaving source of information this site has been for us. Until August my husband and I had never heard of Bile Duct Cancer. We were hit with the grim diagnosis and devasted. I came home from the hospital every night searching for information to help us understand what we were facing. Of all the research and websites this one has been the best!! I have learned so much from you all. I got into the habit of checking the discussion board every day for information about treatments, symptoms, caregiving, nutrition, etc. Thank you from the bottom of my heart. We learned about the various types of treatments that have been successful in treating this cancer which has helped us as we talk with our surgeons, oncologist and radiation oncologist. Mostly we have learned there is hope and survivors and just because the doctors give you a devastating prognosis, don't give up. Thank you for restoring our strength and hope.  My husband is 57 and is doing well. We are from Kansas and we were referred to Johns Hopkins Hospital in Baltimore, Maryland where he had an 8 hour surgery on Sept. 24th. Unfortunately, because of the location of the tumor and the fact it encased his hepatic and portal vein arteries close to the liver, the liver resection we had hoped for could not be performed. Our surgeon removed his gall bladder and performed a roux en y to help his bile drain normally. He currently has 2 stents in the confluent area of his bile duct to keep them open. These tubes extend out of his chest, but he has no external drain bags, although he had bags early in his diagnosis. Currently we are back in Kansas where he is receiving daily radiation treatments and chemo (Xeloda). So far his only side effect has been fatigue. Our hope is that the tumor will shrink enough that he will be able to receive Cyberknife treatments in Wichita, Ks. We won't know until further testing is done in January. I was shy about posting on the site but then I felt like if our experience can help someone else I need to do it. I know how much all of your postings have helped me as a caregiver and I am so grateful to you all. Thank you!!
Debbie

Re: New to group

Hello Debbie....and welcome to our Cholangiocarcinoma/bile duct family.  Thank you so very much for sharing your story and being so kind to be thinking of those who may be learning from your experience with this cancer.  I wish you continued success with the radiation and Xeloda therapy.  Between both treatments your husband is experiencing what most do and that is extreme tiredness but, as you may have already read, it will recede correct itself as time goes on. I am looking forward to a positive report after January's testings have been completed. I am wishing for you and your family a successful New Year.
Good wishes coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New to group

Hi Debbie,
Welcome to the group. I hope those tests in January are what we are all hoping for so your husbands treatment can take a new path to cyberknife. Please let us know how it all goes. Have a wonderful new year.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope